WeHaveAFace has noticed many social media posts regarding what we call "Baby Shaming" for over a year. In many instances, Huntington's disease patients have expressed their desire to have children, or they have openly shared that they already have children. Many within our community have "bashed" others for choosing to have children knowing that they are either at risk or are already gene-positive for HD. Regardless of our opinions on this subject matter, it imperative that we respect the rights, freedoms, and choices of our fellow HD patients. Can we debate this until the cows come home? The answer is, yes. However, this article tackles a specific claim which has been made within some Facebook groups:
"If people with HD stop having babies, we will end this disease."
Team WHAF realizes that this topic is very sensitive, so we asked one of our amazing HD/JHD friends and medical professionals, Dr. Peg Nopoulos, to examine this claim, and to respond with an accurate response.
Dr. Peg Nopoulos:
"Can HD be wiped out of the population by having people at risk or gene-positive stop having children?
This is an important topic to address because on the one hand, it seems like some sort of grand answer to the problem of HD and the wish to eliminate it completely. However, this is simply not possible, and also unethical for the following reasons:
1. Even if it were possible for those who have the HD gene to simply not have children, HD would STILL creep into the population. Every human has the HD gene and every human has multiple CAG repeats in that gene. Even though the most common number of CAG repeats in the population is about 18, there are many people who have repeats in what is called the ‘reduced penetrance range’ of 36-39 repeats. These people may not develop HD in their lifetime (and if they did it would likely be in very late life). However, repeats in this range are more likely to increase when passed on to the next generation. So a person with a CAG repeat of 38 may not develop HD themselves, but when they pass it on, it can increase to 40 and their child with then have HD. Therefore, there will always be people who will develop HD even though nobody in their family had it prior. This is by no means a common occurrence, but it has been estimated that the number of people who have CAG repeats above 36 is nearly 1 in 400 and most of those are people who have the repeats in the range 36-39. So, even if the current generation of people with HD would somehow not have children, this would NOT eliminate HD. It would of course decrease the numbers initially, but it would not eliminate the disease and HD would slowly creep back in as those repeats in the 36-39 range increase over time.
2. Many people have children before they understand they are at risk for HD. Especially for people who are diagnosed later in life, it may be the situation that something that was initially misdiagnosed as Parkinson’s or Alzheimer’s is actually HD and once the diagnosis is finally clarified, that person has already had children, and grandchildren! Therefore, many people have children before they even find out they may be at risk for HD.
3. What about people who are at risk or know they carry the gene and have children anyway? There are many people who are vocal about their opinions that this is the wrong thing to do. Some have called this “baby shaming” - suggesting that a person who is at risk or gene positive is ‘doing the wrong thing’ by having a baby. This is simply unethical. First, many pregnancies aren’t planned. Life happens. Second, even if it is planned, this is a personal decision that everybody has the right to make. It is not unlike the personal decision to not get gene testing if you are at risk for HD (some people are ‘shamed’ for not testing). Yes, the difference is that having a baby involves another person rather than a decision that affects only one individual. However the decision to have a child is truly up to that person (and their partner). Period. Some may choose not to have children in order not to pass on the gene. Others will accept the risk that the child may have the gene. Although the risk may be less clear, having children means you may pass on a whole host of ‘bad genes’ including genes that heighten the risk for things like cancer, diabetes, mental disorders, or whatever disease may run in your family. Passing judgement on others regarding the decisions they make in life is unscrupulous. If those same life decisions are not the same as yours, that doesn’t make them wrong. More importantly, words are powerful and the negative impact and shame placed on others by stating that they are 'making the wrong decision’ is often significant and lasting."
Peg Nopoulos, M.D. Paul W. Penningroth Chair of Psychiatry Professor of Psychiatry, Neurology and Pediatrics Chair and DEO, Department of Psychiatry University of Iowa, Carver College of Medicine
WeHaveAFace thanks Dr. Peg Nopoulos for being in the trenches with our HD/JHD patients and families. We value her time, expertise, and love for our community.
Please listen to our WeHaveAVoice Radio Show on "Baby Shaming" with Kevin Jess and Leanne Delong.
Team WHAF